By Burke Balch, J.D.
Director of NRLC's Robert Powell Center for Medical Ethics
Editor's note. The following remarks were delivered June 29 at the dedication of National Right to Life's Robert Powell Center for Medical Ethics.
It was my great privilege to work with Robert Powell for a number of years in the 80s and 90s as he led the National Right to Life Committee's fight against the legalization of euthanasia and denial of lifesaving medical treatment to older people and people with disabilities.
It was my pleasure to be able to call him a friend - - to enjoy his wit, and appreciate his steadfastness and interest and concern for my family. I could well reminisce, as others have done, about the personal side of Robert Powell.
As director of the center which now has the honor of bearing his name, however, it falls to me to talk very briefly about the more public Robert Powell, and the enormous contribution he made to protecting the lives of the vulnerable.
His own personal story of the pessimism and discrimination he faced in his own fight for life, and the compelling way he so often told it, served to educate many in and outside of the pro-life movement. He drew on his own experiences to write articles, give workshops, testify before congressional committees, and talk with reporters. It also informed his careful work on the "Will to Live," which became National Right to Life's alternative to the "living will," a pro-life advance directive designed in different forms for every state that allows people to say that they want food, fluids, and lifesaving treatment. He played a key role both in drafting and in advocating it.
He served as an important liaison to disability rights groups often skeptical about the right to life movement. He had an undeniable record as a disability rights advocate who worked for access to public buildings and passage of the Americans with Disabilities Act, whose signing at the White House he attended. This and his personal warmth broke through to many who at first took umbrage at his position with our organization.
He was a founder of Galveston Right to Life, president of Texas Right to Life, delegate from Texas to the National Right to Life Committee Board, and then, of course, our vice president from 1991 until his death.
He had an impact on many aspects of the fight to protect unborn children and those endangered by euthanasia and rationing, but let me focus on one high point.
In the early 1990s, as now, many of the elite bioethicists, physicians, and health care economists were strongly advocating that health care be rationed so as to deny it to those deemed to have too poor a quality of life. Much ink was spilled in academic and policy circles, with echoes in the general news media, in praise of so-called "pioneering" efforts by the state of Oregon to ration treatment under its Medicaid program.
The Oregon plan was complicated, but at the heart of it was a telephone poll of a sample of Oregonians who were given a list of disabilities and asked to assign a number from 1 to 100 giving their view of what value life with each disability should be given. These numbers were averaged to give a quality of life score - - different numbers for using a wheelchair, for being in a nursing home bed, for being blind, and so forth. Basically, those who had conditions with treatments that were predicted to result in a high quality of life score would get the treatments; those with treatments predicted to result in a low score would get only comfort care - - painkillers and the like.
Behind all the pseudo-scientific rationalism of this scheme was a simple reality - - the more likely you were to be disabled, and especially to have a disability ranked low by the poll of Oregon citizens, the more likely you were to be denied treatment and essentially left to die. It's critical to understand that the Oregon plan was a turning point. Far from being an aberrant scheme of one state, it was designed and intended to become the model, over time, for all of America's health care. In a very real sense, on whether the Oregon scheme would go forward hung the fates of many millions of lives for decades to come.
Now, to tell Robert Powell's role at this critical crossroads, I'll stop using my own words, and instead quote from a leading history of the disability rights movement, No Pity by Joseph Shapiro.
In early 1992, officials at the Department of Health and Human Services recommended giving the plan a go ahead .... But in March, at a brief Oval Office photo opportunity with officers of the National Right to Life Committee, Bush was urged to stop the Oregon program. ... [T]he group's vice president, Robert Powell, claimed, "If that plan had been in effect when I was born, I'd be dead." The President [George H.W.Bush] listened intently as Powell, who uses crutches and a wheelchair, explained how, when he was just five months old, a malignant tumor had attacked his lungs and spinal cord. Doctors said the cancer was incurable, and the infant lived only because his parents found another doctor (one who used a wheelchair, it turned out) who was willing to aggressively treat the "hopeless" case. Oregon, Powell said, would stop paying to treat such incurable cancers. Bush, who had once struggled to find doctors willing to treat his young daughter dying from leukemia, ordered White House legal counsel Boyden Gray to check Powell's contention that the Oregon plan violated the ADA [Americans with Disabilities Act]. The legal opinion that came back supported Powell. ...
Ladies and Gentlemen, because Robert Powell lived - - and because of what he did with his life - - many, many others will live whose lives might well have been lost if not for his.
On this day of dedication, we here now make this pledge, and call heaven to witness: inspired by Robert Powell's example, the center that bears his name will carry on his fight. And through that fight, for as long as the lives of the vulnerable require protection, the name of Robert Powell will not be suffered to be forgotten among men.